Solitary Confinement

Once again, the steroids provided their usual effect of insomnia, which is wonderful if you’re planning your next strategy for saving the world or subsist as a video game fanatic.  Yet, I don’t fit in either of these categories, so I lay on my comfy mattress (thank God for memory foam) thinking about my current condition and my next moves (that is, blog entry) at 4 in the morning.  Unfortunately, the reality of being neutropenic (possessing a very low white count) leaves me fairly homebound.  While this may sound refreshing for some (like my husband), I am an extremely social person, as if you couldn’t tell by my profession.  Don’t get me wrong, the concept of a clean home would be extremely exciting and that alone will take me months.  However, Rome wasn’t built in a day and I certainly don’t speculate that my focus on this undertaking will last more than 1-3 hours (in 30-60 minute increments) each day. 

You see, one of the greater difficulties that have stemmed either from my body’s battle with the disease or the effects of the treatment, is fatigue and focus.  These 2 facets were nearly completely controllable in my past.  It seemed like my body had unlimited fuel when I was working and in my element.  Complete focus kept me plowing through large projects such as rearranging my closet or garage or completing over 150 desktop items at work, while seeing 20+ patients a day and returning a multitude of phone calls.  The loss of my energizer bunny state is more distressing to me than the loss of freedom to escape my germ-free zone.  After all, I still can go out in the fresh air for walks or healthy people can visit “the sanctuary”.   Lord knows, I’m catching up on all the TV shows/series that people have recommended.  None of which contain the pure humor of Home Improvement, Hogan’s heroes or Rockford Files.  Oh, how I miss my “old shows” but I abhor wasting time watching shows I’ve already seen when there is so much that I haven’t seen yet. 

Even when I do wander out of my confinement, into the fresh, open air (which has been mostly pouring rain as of late), my body still doesn’t give me long before surrendering.  When I wandered off with a friend to run a few errands last week, I felt the oppressive drag of fatigue after about an hour and yearned to proceed home to sit on my cozy recliner with my heated throw blanket to warm and relax me, so that I could recover and move on to another feat (of 30-60 minute duration).  The breaks required last longer than the activity itself, which is quite distressing.  Alas, it is when the inspiration of my blogs arises so it isn’t all lost.  And Facebook occasionally perks me up with its humorous and inspirational entries and of course, the wonderful moral support that people express.  My circumstance is similar to a prisoner in jail who is confined to the prison campus but still has access to TV, books, video games, gym, cafeteria, and outdoors for limited periods of time during the day, but not necessarily on their schedule.  I can see now why it is still a punishment.

As I write, I realize I haven’t even communicated my greater concern about being neutropenic.  The two things frightening me most are (1) the possibility of acquiring an infection that either sets back my treatment or lands me in a hospital and (2) the potential for developing a lower white count after this infusion which delays my next infusion, thus extending the duration of overall treatment.  This, would stall my return of energy and essentially my return to work and the freedom that I was so accustomed to previously. 

One may think, but not necessarily ask, “Do you think about this killing you?”  Not really.  It may be a fleeing thought occasionally but death really isn’t an option.  With the outstanding care team by my side and my astute skills at recognizing changes in my body (ok, I understand it took me two months of symptoms before seeking care), I believe that even if I were to obtain an infection or other ill effect, I would recover.  After all, I did just run the Boston Marathon this past April.    

Hope is being able to see that there is light despite all of the darkness. ~ Desmond Tutu (one of my favorites)

My Hope socks!  Seemed appropriate for today. 

Cycle 1 Day 15 - Neutropenia Arises

Today was my second chemotherapy infusion (out of a total of 12).  The typical infusion day will start with a blood draw.  Results return about 15 minutes later and then the oncologist comes to talk before getting started with chemotherapy.  The reason for this process is that it becomes too dangerous to give chemotherapy if one's white count (particularly neutrophils) becomes too low.  For me, the cutoff is 200, for others it is 1,000.  This means that if my count drops to 200 or below, I will have to prolong my time between infusions which will result in an extended duration of my overall treatment.  

Lucky me, my absolute neutrophil count (ANC) was 600 today (see below).  YAY!  It may not be enough to fend off some infections so I have to be extremely cautious about exposures and check my temperature twice daily now.  In addition, I am now slightly anemic (my red cells were affected as well) but my platelets remain normal (although 100 points lower than pre-chemotherapy levels).  

The neutropenia* and anemia may contribute to my fatigue (along with the chemo drugs themselves).  But, it can't stop me from exercising or writing my blog!  It just means that Chris gets his wish....I nap very easily.  My creativity may be impaired as well, since I often doze off in the middle of my documentation, wiping out some of my most creative thoughts.  (Or at least that’s my current excuse.)

* Neutropenia is defined as a low neutrophil count.  Neutrophils and leukocytes together with some other lesser known cell types (monocytes, eosinophils, etc.) comprise one’s total white blood cell count (WBC).  Neutrophils typically respond in acute infections and inflammation and lymphocytes are primarily responsible for creating long-term antibodies and killing targeted antigens or bugs (bacteria and viruses) that your body recognizes as abnormal.  

"Fight the good fight every moment, every minute, every day.  Fight the good fight every moment, make it worth the price we pay...it's the only way." -- Triumph  

If you don't know this song by Triumph, listen to it on YouTube (https://www.youtube.com/watch?v=QEgpcgO4Hvk) and read the lyrics.  They are very inspirational.

My results:

The WBC dropped from 10.5 on 1/15 (just before chemo) to 3.8 (1 week after chemo) to 1.9 today (2 weeks after chemo and at the start of 2nd infusion).   You can see the hgb (hemoglobin) and hct (hematocrit) dropped to make me anemic.  Lastly, Neut# Auto (Automated neutrophil count) is 0.6K today (or 600), down from 2.8 (1 wk ago) and 7.1 prior to chemo (normal range is 2.0-7.8).

Running my Race #2: Patience

Is it crazy or unusual that I look forward to my infusion tomorrow?  I’m not sure if it’s my desire to eradicate the cancer from my body as quickly as possible or to test my theory about the medications causing my blood pressure to decrease, but I really can’t wait for chemotherapy tomorrow.  Being the scientist, I also yearn for more data points in regards to the effects of the medications on my blood cells. They draw blood before every infusion in order to check my blood counts.  In addition, I’m curious if I will respond any differently this time around than the first time and of course, whether I’ll get the energy boost (i.e. insomnia) from the steroids again. 

Two weeks seems a long time to wait between treatments when I just want to get this over with and return to work.  But, alas, my impatience surfaces once more.  This brings up another similarity to running and race preparation.  You need to be patient in your training and learning.  You have to trust that your training will prepare you for the ultimate, importance race.  In running, being impatient can lead to injuries or setbacks particularly if you push yourself too hard, too fast, too soon.  It can cause a similar impact with cancer.  Pushing oneself or the treatment regimen too hard, too fast, too soon can lead to infection, increased fatigue and worsening side effects.   

Patience is necessary in many aspects.  We must be patient to allow our practice and preparation to strengthen us and carry us mentally toward the finish line and toward obtaining our goals.   While at the same time, we may need to practice patience during a race to avoid kicking too soon and burning out or going out too fast and then not having the energy to finish well.   Those that know me, know that this is one of my biggest struggles.  And boy, did it come back to bite me in the biggest running race of my life -- the state cross-country championships my senior year in high school. 

Although our team won the state championship title in 1984 (the first and only state title for my high school for 30 years), I felt failure because I didn’t possess the patience to follow my game plan.  Surprisingly, this still bothers me today.  Yet the gratitude of having a fantastic group of teammates who rallied behind my lead and overcame the unthinkable odds (as Mead High School was considered unbeatable by the rest of the state), made it all worthwhile in the end.  This is an example of how sometimes God uses our weaknesses to make something greater!

My dad used to say, “Patience is a virtue.”  Not only have I held these words close to my heart, but I have to remind myself daily.  Of course, he also jokingly recited this pseudo-prayer, “God grant me patience and I WANT IT RIGHT NOW!”  (I’m a true believer that God has a sense of humor.)  Nonetheless, I’m sure this is another test that God is putting me through to make be a better, stronger and more PATIENT person. 

Patience is not the ability to wait, but how you act while you are waiting. – Joyce Meyer

No Eat, No Happy

I’m pretty sure that I’m addicted to food and water.  No, it’s not just the innate drive to live and survive.  Much like the alcoholic and their eye opener, I awoke this morning, thinking about that first glass of … water.  Even my Keurig was taunting me by turning on when I came downstairs.  Knowing that I could not eat or drink after 6 am for my 10 am CT-Angio this morning, naturally I awoke early.  Thinking that it was after 6 am, I laid in bed listening to Chris wash dishes and Peter prepare for school.  When I finally drug myself out of bed, I discovered it was only 6:30 am.  Ugh, I could have had that glass of water had I arisen upon my first cognitive thoughts and eyes opening.  Of course, what does one do when they get up so early?  Well, I might as well exercise.  After 4 miles of walking on the treadmill, thinking about water the whole time, my thirst only increased.  Chris didn’t need to remind me (but he did) that exercise is the last thing he would be doing if he were NPO (nothing to eat or drink).   As for me, exercise is the best distraction.  I also read a book while on the treadmill, to produce even greater distraction.   

All right, I can hear you.  Isn’t your appetite supposed to be suppressed and aren’t you supposed to be nauseated while on chemotherapy?  The answer is yes and no.  In my vast experience of 1 infusion, I’ve observed that my appetite is suppressed for about a week and then it roars back voraciously.  The nausea is worse on the first 4-5 days after infusion but then lingers intermittently for about a week, but not enough to inhibit eating.  For the 5 days prior to infusion, my appetite acts like a goat, eating everything in its way.  And with the chemo shrinking the nodes that were strangling my esophagus, eating is easier now as well.  Hopefully, I can keep my activity level high enough to keep my weight from creeping up too high. 

Now, about that CT-angiogram.  It was performed in hopes of determining the cause of my low blood pressure (hypotension).  Yes, you read LOW blood pressure (BP).  After being treated for high blood pressure (typically around 170/110), I have now been off of BP meds for nearly 3 weeks and have been recording BP’s in the 90/60 range.  This has resulted in bouts of lightheadedness and fatigue, particularly with changes in position.  The CT revealed the anatomy of my vessels in relation to my port to be sure that this was not contributing to my hypotension.  Although I don’t have an official report of the CT yet, I was able to review the images and it all appears normal (see below).

Just a note for those who’ve never endured the unique experience of a CT with contrast.  CT contrast gives a very interesting, warming sensation.  As it travels through the veins, it produces a flushing feeling in the face, bitter taste in the mouth and then a warming sensation in the urethral region, as the tech describes it, “Like you have just urinated on yourself.”  It doesn’t actually cause one to urinate, but just makes you feel as if you did.  The scanning takes only about 5-10 minutes after the intravenous injection of the contrast.  And, of course, due to the imaging of the neck, they ask you to, “not swallow” which immediately triggers an urgency to swallow.  If you’re lucky enough to obtain a chest CT they similarly request, “Stop breathing.”   Overall, it’s not a terrible experience, except the ravenous suffering from starvation and thirst (ok, maybe a little exaggerated!)

People who love to eat are always the best people.  - Julia Child 

Bones and vessels are white.  Dark areas represent air-filled spaces such as sinuses, lungs, esophagus (NO, not my brain).   K

A New Normal

Today was a good day.  I don’t know if it was the sunshine or the first outdoor run that I’ve taken in over a month, but I possessed energy (close to my previous level) and was able to get a few things done around the house as well as walk with friends.  Being productive is an important part of feeling some sense of normalcy.  The reality of cancer is that your view of a normal day or normal life, changes drastically.  Not only is your daily schedule modified by appointments, but there is nothing routine, as each day presents itself differently.  There are new physical challenges and one must learn to obtain happiness through small milestones, observations or achievements (such as getting the laundry done, a swept patio, the croaking of a frog, squeaking of a hummingbird, or having a day without dizziness or nausea).  In addition, I’ve learned to be thankful for the small things, like being able to breathe without coughing or just staying well (as an illness could lead to a serious setback in treatment).   

In some ways, I’ve even become a more patient person (not a word usually associated with me).  As the busy-ness of my day is slowed and I juggle less activities, I am less bothered by traffic, being in the slow line at the supermarket or when someone is running late.  This is a positive change from the hectic lifestyle that inhibits one from appreciating the simple things in life.  

Eating can be a challenge.  Previously, I would eat whatever was in sight. Now, after infusion, I have to really think about what foods will taste good since infusions modify my taste buds.   Good or bad, I’m not sure yet, but my taste improves after a week and then I have to control my appetite, before I eat everything in sight to make up for it!  This may change over time, but that’s my current status.   Water has become my favorite drink.  I probably drink 8-10 eight oz. glasses daily, whereas I considered myself lucky to consume 3 glasses daily when I was working.  This has its consequences though.  My sleep gets interrupted at least twice, to urinate (TMI?)  I warned you that I would be open and honest in my blog posts!

Lastly, my running has converted to either walking or jogging (eek – that dreaded word that every runner hates to hear!)  While I may start to venture into running again on my good days (and weather permitting), my pace is too slow for me to genuinely call it running yet.  I’ve been advised by my cardiologist to keep my mileage to half of my previous quantity and the intensity lower.  Being the compliant patient that I am (stop laughing), I will follow doctor’s orders.  Currently, I don’t think I can achieve that level anyway but as my breathing has improved and chest pain dissipated, I do feel ready to let loose again.

What hasn’t changed?  Well, of course, my wit and charm remains! J  I still yearn for exercise, whether it’s just doing stretches while watching a movie or going for a run (when able).  No matter what lies ahead, I like to start my day with a workout and coffee (even if the coffee doesn’t taste well, it still gives me a boost).  We are creatures of habit and sometimes just that one bit of routine (even if it’s only a 10 minute walk on the treadmill), makes me feel good.  For me, I also desire companionship and remain extremely social.  This can sometimes be difficult, as I’m advised to avoid “germ exposure” due to my low white count, but I’ve found solace through walking in the open air with friends (who are not ill) and of course, making conversation in waiting rooms at the doctor’s offices and infusion center.  Chris has also been a loyal companion and our banter (mostly humorous) can be quite entertaining.   In addition, people’s cards and well wishes through Facebook or my blog posts keep my spirits elevated.

If you get the opportunity to stop and reflect for a moment, think about what you would consider a normal day.  Acknowledge the small accomplishments and joys of each day.  If you believe in God or a higher power, thank Him.  Also take the time to thank the people who brighten your days.  Appreciate the person who waves at you, who lets you merge in traffic, who smiles at the grocery store or who calls to see how you’re doing.  Seek the beauty that surrounds you, whether it be the blooming heather, an upbeat song or a humorous TV show.  Every day, we have something to be thankful for and by recognizing these gifts, we, in turn, will live happily.   The happiest people don’t necessarily have the best of everything, they just make the best of everything they have. 

Running my Race: Preparation

You knew eventually that I would formulate the comparison between running and my cancer journey.  After all, I have identified myself as a runner ever since completing my first cross-country season as a freshman in high school.   (Even if I only ran cross-country to get in better shape for basketball!)  Whether you’re a runner, a chess player, a musician or artist, there are four P’s that are necessary for continual, steady improvement:   preparation, practice, patience and perseverance.  These are exactly the same qualities needed to push through a cancer diagnosis, whether you are the patient or a close family member, friend or loved one of an individual with cancer.  And, as with running, it’s always nice to bring friends along to help you! 

Since each of these 4 P’s is important independently, I will break them up into separate blog posts.  Read:  it’s too much homework to do in one day!  Preparation includes thoughtful analysis, input and planning.  As many an athlete will claim about the difference between winners and losers:  the separation’s in the preparation.  The better prepared you are for an event or life changing diagnosis, the better the outcome.

As a runner, one not only has to train regularly but also mentally prepare for every race.  In high school, this meant running the course the day before a race and memorizing every hill, curve or narrowing along the path.  As a team, we would analyze where would be best to pass people, where we needed to be sure we were properly positioned to avoid being slowed by others and where we would have to make our final kick.   In the 1-2 hours prior to a race, I would reach into my inner self and visualize the course in my head and strategize throughout.  If I knew my competition, their individual race strategy (whether they had a fast kick, were a good pacer or liked to put the squeeze on you) would be incorporated into my game plan.  This routine would imprint my race plan and improve my odds of successfully executing my race plan once the starting gun was fired and the legs were in motion. 

How does this relate to cancer?  As I’m early in this process, I’m just learning what I’m going to need for preparation.   As a physician, it started even prior to diagnosis.  When I knew my symptoms weren’t acting like a typical infection (sinus or pneumonia) but having the fevers, chills, sweats and cough, I started doing my research and suspected lymphoma.  So, I did my research to determine what tests needed to be performed if indeed my chest xray showed the lymphadenopathy (lymph node swelling), that I was suspecting.  I arrived prepared to get these done at my first appointment. In the event it showed the appearance of lymphoma, I knew what the next steps were to ascertain the type and then proceed with assessing treatment options. 

Even the mental preparation started long before I made the appointment to get my chest xray and lab work.  After reviewing UPTODATE.com* (while on vacation), I mentally prepared myself for what lay ahead of me.  The testing, the biopsies, the treatment were all on my radar.  What I would have to do for work, who I wanted on my care team, even how, what and when I would be able to tell my family were on my mind…if I was correct in my assessment.  Although I didn’t want to jump the gun, I’ve always wanted to be prepared.   After growing up with boy scouts, marrying an Eagle Scout and now having sons in boy scouts (and 1 who has achieved Eagle), I’ve always lived by their motto:  Be Prepared. 

After the CT confirmed my suspicion for lymphoma and the biopsy revealed the type (Hodgkin’s), I was on my way to preparing for the treatment.  With the help of a colleague who does lymphoma research and a review of UPTODATE.com again and a few other resources, it was clear how Hodgkin’s lymphoma is generally treated.  Then, I could move on to researching the medications involved.  Once I reviewed the medications, I could prepare for the potential risks and side effects and what it may take to alleviate or persevere through these effects. 

But, I didn’t just rely on my research.  Throughout this process, I definitely listened to my care providers.  My oncologist, pharmacist, surgeon, pulmonologist, family doctor and cardiologist have all provided extremely valuable input and the experience to go with it.  They have been excellent resources for the questions that only experience can answer and articles don’t always address.  I continue to prepare each week for my appointments and treatments.  When I have signs or symptoms that I can’t explain or concerns for which I can’t find causes, they are my coaches.  They are the ones that I lean on for finding or giving the answers to my concerns. 

Although I still have a long way in my journey, the preparation will continue.  Even making sure that we pack a lunch on infusion days (so that Chris doesn’t have to buy a Snicker bar and a coke) will be part of the preparation.   Having humorous videos available for the days where I don’t feel like doing much helps me enjoy the day even when I can’t do the things I want to accomplish.   Most importantly, keeping in touch with the people I love, keeps me engaged and mentally prepares me for the rougher days that lay ahead.  Just like a marathon, the early training is fun and easy and I know it will get more and more difficult.  However, I will push through and just like in running, I know that my preparation will pay off and take me to the finish line. 

Before anything else, preparation is the key to success. ~ Alexander Graham Bell

*UPTODATE.com is an excellent resource tool which aggregates studies and journal articles to produce the most up to date, evidence-based information to help diagnose, treat and understand different injuries or disease states.  One may obtain basic information without a subscription but most medical personnel (including myself) maintain a subscription to get the more detailed research and statistics. 

Dizzy Blonde

One of the most challenging, yet intriguing aspects of practicing medicine is trying to solve puzzles.  The puzzles that present in medicine come in many forms including putting the symptoms together to determine the cause or diagnosis, discerning the risk factors and projecting into the future and in my case, trying to discover the cause of a new change in my health.

OK, it may have been a long time since I've been called blonde. Let's just call it a gray-blonde blend.   But, the dizziness is becoming evident.  During my visit to the cardiologist on Wednesday, I reached an all time low...blood pressure that is.  My blood pressure was 98/68 standing (without any blood pressure medications on board).  This is quite a switch from my typical blood pressure of 130's/80's  (while on blood pressure medication) just a few months previous.

The dizziness seemed to start shortly after my first chemotherapy infusion.  While driving to my partnership meeting that evening and even during the meeting itself, I felt something akin to motion sickness.  It would come in waves and could last 10 minutes or up to an hour.  Given the toxicity of the medications used, it didn't surprise me and since I wasn't having any severe side effects, I didn't think a whole lot about it.  As the week progressed and my energy level seemed to improve, my dizzy episodes actually increased rather than decreased.  And after my cardiology appointment revealed the low blood pressure, I started checking my blood pressure when the dizzy episodes occurred and discovered that my blood pressure (BP) was considerably lower than usual.

This morning after showering, I became very dizzy and immediately lowered myself to the floor.  As it didn't dissipate quickly and nausea soon accompanied, I took an ondansetron (anti-nausea medication) to help me get dressed and ready for my oncology lab work and appointment at noon.   At the doctor's office, my BP was once again 94/64 and the dizziness was still present.  We (my oncologist, myself and the cardiologist on-call) racked our brains about the potential cause of this sudden reversal.  My BP was 170/110 when I started BP meds back in 2001.  So, why the sudden  dramatic change?

Initially, I thought it might have something to do with my port*, since the dizziness occurred today shortly after trying to get the remaining glue off of my incision sites for the port.   The cardiologist didn't think this was the issue, so I researched the medications upon returning home.  Both Vincristine and Bleomycin have hypotension (low blood pressure) listed as a potential side effect.  With the Bleomycin, this appears to be in conjunction with an allergic reaction and would likely be associated with other symptoms including fevers, mental confusion (more than my usual, that is) and wheezing.  The Vincristine, however, has BP changes listed as a common reaction and hypotension is listed under the serious reactions.  Therefore, my suspicion lies with the Vincristine, especially since the dizziness also comes with tingling in the fingers/toes (a known neurotoxic response of the medication).

Well, my family found this blog very boring.  So, if I put you to sleep, I apologize (unless you were reading this to help you fall asleep, that is).   Yet science is truly fascinating and the broad variability of responses to disease and medications reveals the immense complexity of the human body.  The inner scientist in me yearns to learn more about how and why these strange things occur.  While annoying, they are more of a provocative nuisance than a misery.

* A port is a reservoir that is placed under the surface of the skin that allows direct access to a major vessel.  In my case, the jugular vein was accessed, in order to allow the medications to get into the blood stream rapidly and without damaging the smaller veins.

With ideas it is like with dizzy heights you climb:  At first they cause you discomfort and you are anxious to get down, distrustful of your own powers; but soon the remoteness of the turmoil of life and the inspiring influence of the altitude calm your blood; your steps get firm and sure and you begin to look – for dizzier heights.  ~ Nikola Tesla